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  1. #1
    Join Date
    Nov 2014
    Central Pennsylvania
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    Default Wegeners is back!

    Let me be clear, i have no symptoms, and my blood work is great! Its just that, for the past year i have been off all immunosuppresents. And enjoying it oh so much! First in 17 years of this beast entering my life. You know what happened though? I got really spoiled, and was even able to subconsciencly forget about being a sick person. It was so wonderful! But yesterday it ended. See, i was waiting 9 months to get in to my new rheumy, since she was the dr that cleveland clinic drs recommended here in Pa. So in the meantime i was under cleveland clinics care, at least if problems arose. When i went to them last march for a second opinion, they recommended going on methotrexate right away. I was just sick about it since i had just done rituxan 1 month prior, and my "ex" rheumy was going to let me off all meds until i flared. You know how this issue is very contraversial....and i wanted a break! And i was not facing any issues, so i decided to wait til i got to my new rheumy and see which side of the coin she landed on with the treatment plan. And then it took 9 months to finally get in with her. And so yesterday was HUGE for me...but i didnt go into it with that attitude. I was just excited to finally have a new dr! So this new dr, she did her fellowship at cleveland, trained under the one and only Dr Huffman, and worked there 6 years as an attending. SO i know she knows her stuff. And what do you think happened when she realized i wasnt taking their advice on methotrexate? Ummm...yeah she hit the roof. I didnt even see it coming. I was not even thinking about the fact that she would feel that way (Duh,tho!) she told me 3 times if i dont follow her advice, dont come to her. (In other words she was not very merciful)...i am to start methotrexate today, and come back in 2 weeks. I left her office and cried and cried. I dont really know why, except that i was forced to face the reality of this disease in my life and i had become so used to pretending.I know she is a great dr! Although im hoping a bit more kind at my next visit. And im sorta confused. I asked her the plan in the future, you know, will i ever go off of it? Her response? She doesnt hold a crystal ball, but at this point research is clear, i will be on maitenance drugs the rest of my life! Wait, WHAT???!!!! Research shows???!!!! Research shows every weggie is different, how do you then take a blanket approach to my treatment plan??? And i happen to KNOW several of you who have been drug free, some many years! I dont know...what do you think? I think im still fighting reality, maybe? Thanks guys for listening!!!
    Last edited by im so blessed; 01-28-2018 at 04:28 AM. Reason: I can't spell

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